Who did you talk to that understood?

[Phoenix~Mama]

My DS was born last week at 33+3 weeks, due to severe pre-e. He is doing pretty good. Still needs help with breathing, on the nasal canula now. Still needs help with temp, and has a feeding tube.

I've been able to put him to the breast a few times in the last two days and he gets some good sucks in and has a good root, but he doesn't stay latched long, and tires quickly.

It has been so hard for me to leave him, as it feels so unnatural to not have him with me. My emotions have been insane.

I feel like I don't really have anyone to talk to. How did you cope through the NICU stay?

[justKate]

The other parents in the NICU and my husband. I see you don't have that option though--is DS' dad in the picture? I can't imagine doing it single.

The worst time for me was nighttime, when I would go to bed and lay there and cry for my baby. I'm sorry you're going through this.

[haydensmomma7407]

It's so hard hun, please don't get discouraged. I would spend a lot of time on the "Preemie Parenting" section of Babycenter just reading information and I spent a lot of time with the NICU Lacatition Consultant. Ask if your NICU has a nurse that is also an LC...she will be your best friend!

[ShanaV]

I had no one with nicu experience to talk to, but I did live with my dh and parents, and they all supported me. I would go to the nicu in the middle of the night a lot of times. The times the nicu was closed were from 7-9 am and pm. My sleep schedule was all messed up, so I'd visit from say 2am till 7 when they kicked me out. Then go home and sleep, and visit from 3pm till 7 again. Going in the middle of the night was fun cus it was so quiet and less hectic. I couldn't sleep at night. I'd try, I'd get ready for bed, lie down, and cry cus I missed my babies so bad. I tried to sleep but it just wasn't happening, so I'd say F it, I'm going to the nicu.

At around 32 weeks my guys would mouth the boob, but not do much with it. Around 34-35 they could do more with a nipple shield. They also took bottles fine, which is of course what the nicu requires :-/ But they didn't come home till about 37 wks Hopefully yours will come home faster!!

So, I coped by just doing things baby-related the whole time they were there. I was either in the nicu, eating, sleeping, showering, or picking up things from babies r us. I wish I had known about MDC at the time! You're lucky you've come here!

[aikigypsy]

I find it's really hard. The nicu where my son is is about 4 hours from where we live. I also have an almost-3-year-old, who needs me and DH to be around. We could have maybe all uprooted and moved closer to the nicu, but decided not to so that DH could keep working some and DD could start preschool. We are currently living with my parents, so they help out with DD when we're visiting the nicu, usually one at a time.

I try to go visit 3 days a week, but it's been less than that sometimes. I usually stay with a friend nearby, but once in a hotel and once at the hospital in a parent room (which is only rarely available). I breast-pump all the time. I feel like I don't really have a baby, just the @$#@$#% breast pump. We're just riding it out, emotionally, trusting that someday, hopefully soon, our baby will be home with us.

Other parents in the nicu are going to be the best, in terms of understanding where you're at, if you can connect with them. I've found some to be friendly, and others not so much so. We are just taking it day by day. It's been especially hard the last few weeks because they keep saying that he'll be able to come home in a few days, then something happens (mostly apnea) and he's not ready. He's the giant of the nicu now, at over 40 weeks and over 7 lbs. I want him home 2, 3 weeks ago!

Right now, he's on track to come home on Monday, but it feels like a long way off, and not at all a sure thing.

[Bokonon]

I don't think I had anyone to talk to that understood, but I did have my husband. It was a long and lonely 6 weeks.

When my second was born and in the NICU, she was doing so much better than DS had been, and the whole NICU thing was so familiar that I didn't need the support that I could have used with DS, but I also had a bigger network via Facebook.

[sparklett]

No one IRL had been through a similar experience, so I gained considerable support from the forum here at MDC. I also developed a close relationship with two of the night nurses and they were very willing to chat. I also journaled a lot and ended up seeing a therapist for awhile to get through the emotional side of things. That really helped. You might also find some additional support from fellow pre-e moms with NICU babies over at the preeclampsia foundation.

If someone hasn't been though it, they really have no idea what you're going through.

FWIW, I had severe pre-e and my son was delivered at just about the same age as your babe. Please feel free to PM me if you want to commiserate.

I'm so sorry you're going through this.

[ShanaV]

It kind of sucked for me because the other nicu parents were all very standoffish. Everyone minded their own business and averted their eyes from everything. Of course, we weren't allowed to go near any other baby's bedside, so everyone was kept physically separated. And there was no pumping room, people just pumped bedside. Occasionally I'd see parents in the hallway or cafeteria, and we pretty much just said hi, or nodded.

I talked a lot with several nurses too. Some were extremely friendly and very helpful. I loved them. Others were nazis, and I just dealt with them minimally. Once they realized how confident and competent I was handling my babies they pretty much let me do my thing.

[Phoenix~Mama]

Thank you everyone for your replies. I had met some nice Mom's in the NICU, but all their babies have gone home now. Haven't connected with anyone else yet.

I'm feeling my way through nurses, and I keep ending up with ones I don't like so much! I don't know if there is a way to note about not getting certain nurses assigned to my babe, because it's stressful dealing with a nurse that I have a severe personality conflict with.

The LC here has become a great person to talk to and she has been helping me battle nurses who want to push bottle feeding. She is pushing the use of an SNS for the two feeds a day that DS will need the extra fortifiers in.

I'm tiring of the battle everyday with a new nurse about my plan to focus on BF and I will not give my baby a bottle. I told them they are welcome to keep trying when I am not there (as they do and he has yet to show any interest in it) but when I am there I am focusing on BFing. Period.

The LC even went to the doctor for me and he is okay with our plan. It just seems I have to re-iterate it everytime I get a different nurse of the one nurse nazi that I REALLY don't like.

I think for the most part I do feel lonely. My Mom expects me to be rock and not show emotion except to keep going forward. She doesn't understand my random emotional breakdowns.

DS's Dad does come to the hospital everyday for one care time (shocking) but he was very verbally and emotionally and borderline physically abusive towards me in the past, hence us not being together anymore. And this has made this whole thing even harder because he is trying to be nice right now, and it's taking a lot of strength to not just fall into his arms and bawl, because I know damn well his nice act won't last.

But DS is a little warrior and doing really good. We just have to get feeding down now. He tires very fast but he seems to be getting a little better at figuring out nursing everyday. So he has yet to be able to take a full feeding orally, and is still just practicing at the breast, but the LC and the nice nurse practioner thinks he will get it soon and that he will be a good nurser.

So just keep going, I guess. I hope it's not too much longer.

[Bmorefarmgirl]

just keep trying and hang in there! i found that pumping was actually a really therapeutic thing for me. i would get up in the middle of the night and pump and it made me feel like i was doing something to help. when my litlte boy got out of the nicu, we went home with like 25 lbottles of breastmilk because i pumped all the time to keep my supply going and to feel productive! i put him to the breast every time i went to see him. the nurses were very encouraging. my mom and i did kangaroo care every day all day. please get as much rest as you can and if you can, get dr sears preemie book. it is a great book with awesome advice. try to think of the isolette as an outside womb and the staff at the hospital as helpers. ti might get frustrating, but they want to hlep your baby! don't give up and if you get tired of explaining what your wishes are, ask if you can make a sign or just make a sign and bring it to them. we had a sign on my baby's isolette that said, "no baths! mom does not want baby to have a bath." at first i felt kind of weird, like they would judge me or something, but eventaully, i was like, hey, it's my baby and my wishes!

just hang in there and try to do as much kangaroo care as you can. some of the nurses got a little freaked out when we would go in there and hold him for hours because they were worried about his temp, but he was always toasty warm tucked inside our shirts, and the nurses eventually got used to us and knew we were not going to go away or change what we were doing and they were very nice.

just lean on them, ask lots of questions, and then run like heck out of there and don't look back when your baby gets out!!!!! *Big Hug*

[nicky85]

Mostly my husband and I relied on each other. There were some really great nurses who were in the NICU. I talked a little to some of the other moms in the pump room. A girl from my high school whose son had been in the PICU for infantile botulism was a big help. It was kind of fate because we had barely talked in high school but she found on facebook through mutual friends. She's a doula, homebirther, urban homesteader, and homeschooling mom like me. I got lucky. I count it as a blessing from God. Fortunately, my son had a birth defect and was strong and healthy after his operations and we were able to take him home after two weeks.

[Crunchy Frog]

Just wanted to say congratulations on your son. My twins were born at exactly 33 wks 3 days too. They came home at 3 weeks; still very tiny, but healthy. They've been really healthy ever since and are now really big boys. I'm a single mom too.

As far as the nursing, sometimes they just have to mature a little bit before they get it. Mine were a bit older than yours when I first tried, so maybe the systems had matured a bit more, but they both got it. They didn't seem to have any problems going back and forth between breast and bottle either.

One thing that I did during the NICU stay was to really get rested up and recover from the preeclampsia.

Hope that your baby can get out of there soon. And don't get discouraged on the breastfeeding. Just keep working at it and he will get it. And if there's particular nurses that you don't want taking care of him, let them know (I wish I had been brave enough to that with mine).